Disabled Dad

One of the scary side effects of chemotherapy (for me at least) is that it suppresses your immune system. I try to be very careful because I like my immune system and miss it. Early on I purchased the large size Purell hand sanitizers and decided to wash my hands after using the bathroom. The doctors insisted that I have any needed dental work before this treatment protocol started (I did and will post about that fiasco!) and I cannot have the needed tube put in my eardrum (seriously) until the chemo is done and out of my system.

I try not to be too paranoid, and I actually am not. I do wash or sanitize my hands more and I am aware of my surroundings. I don’t stay away from people per se but I don’t insert myself into crowds or interact with groups of children much (I stopped by a four-year-old’s party yesterday, my porn buddy‘s youngest) but kept my personal space.

Hospitals can be boring places, punctuated by moments of complete terror (or despair). I often go alone (my choice) and that leaves time to just think, which can be a dangerous thing. So, thanks to my good friend Steve Jobs, I bring a tablet, as many do. While waiting for blood results in a chemo chair, hanging out while Truebeam is being fixed or recharged, or whenever, I can browse the news, watch a movie, read a book, etc. When given the choice of thinking about rectal cancer or a rogue president, well, ok, those are pretty equal, but you get the idea.

A common side effect of my treatment is diarrhea which I pretty much have under control (glad you asked?) but I do need to use the bathroom more often than typical (for me). Additionally I need a full bladder during radiation and that often necessitates an immediate trip to a bathroom when I get off the table.

Putting this together, I am often in the hospital with a tablet and needing to (insert your favorite expression for using the bathroom, I like …) point Percy at the porcelain.

As explained in my post about the enema (the nightmares and flashbacks are receding) the bathrooms in the hospital are sparse. Most consist of a rather large room with a toilet, sink, a roll of rather thin toilet paper, and a wall pack of toilet seat covers (which this article says are fairly useless anyway). That is all that there is. So I ask you, what is missing? Or, to word that another way, what is the proof that there is no empathy in this big-city hospital?
    
So now I ask you, where do I put my tablet? I does not fit in the basket with the latex gloves (why the heck are they there anyway?), it does not balance on anything in the room, there is not even a toilet tank! I considered turning over the waste basket and using it as a small table but then I remembered that night in the motel room in Daytona Beach after the Grateful Dead concert and the trashing of the room, the cops and … but I digress. Alas, there is no appropriate place for my tablet, or man-purse, or anything I am holding, other than Percy.

So I put the tablet on the floor.

When I was done with my mission, I washed my hands (and yes I sung the Happy Birthday song twice), and picked up my tablet only to find it was a bit wet on the back. I wiped that off and needed to wash my hands again, so I put down the tablet (guess where) and washed my hands again …

How much is a fucking shelf? A small basket? Has no one in this big-city hospital ever given a moment’s thought to how someone who actually cares that they are immunosuppressed uses the bathroom? Is this a money making thing (the longer I am sick, the more they make)?

(Warning: this post is about to get deadly serious)

Healthcare-associated infections (HAIs)–infections patients can get while receiving medical treatment in a healthcare facility–are a major, yet often preventable, threat to patient safety. Together with health care and public health partners, CDC is working to bring increased attention to HAIs and prevention. ~CDC (follow this link for info and statistics)

Here are actual statistics from my the hospital providing my care:

All I can say is thank god I am not having colon surgery …

So you see, I am not very happy with having to use the bathroom floor as much as this hospital seems to continually want me to.

This past Friday, radiation day 24, I got off the Truebeam’s table, grabbed my tablet and was determined not to use the bathroom. I figured I could make it to my car and use a coffee cup or something … or better yet, make it home to my bathroom, WHICH HAS A PLACE FOR MY SHIT, so to speak.

I made it to the lobby of the hospital and I knew my plan was doomed to failure. I spied a bathroom and went in.

To my utter delight, this bathroom had a small vending machine! And the machine had a flat top! THERE IS A GOD! Now, the god just might be Baal (who was mocked by Elijah saying that Baal was in the bathroom) AND that god is potentially empathetic … but again I digress.

A vending machine!

Opps, wrong photo. That’s from my IEP Team meeting presentation. Here is the actual machine I saw:

For 50 cents I can get a sanitary pad, open it up, lie it on the floor and put my tablet on it! OR, I can put my tablet on top of the machine, and voila, a shelf! A shelf that charges a dollar for a tampon. Really?

So there you have it, some bathrooms have a multipurpose shelf. If it also sold condoms we would have a trifecta …

I have learned to ask “Where can I buy a tampon?” so as to find a bathroom that won’t make me interact with the floor. And maybe, just maybe, protect my fragile immune system just a bit.

Which brings us to a favorite word of mine, einfühlungsvermögen (it’s pronounced just like it sounds) or Einfühlung for short. Loosely translated, it means to be able to understand someone else’s feelings. But until 1909, there was no real alternative to einfühlungsvermögen in English. The British psychologist, Edward B. Titchener, thought einfühlungsvermögen represented a powerful concept, but realized it would never catch on if it couldn’t be pronounced. So he invented a new word, easier to pronounce and similar to the existing English word sympathy. He created the term empathy.

Empathy is distinguished from sympathy in that it is not just about the ability to feel for someone else. Empathy involves being able to take someone else’s perspective. Which brings us back to our working definition for achieving relevance:

Empathy is the ability to stand in someone else’s shoes.

I started as a [Boston University’s overall youngest tenure track] professor of engineering design and progressed into having my own engineering company designing computer type stuff (jtag in-circuit emulators, if you must know). For analogy sake, let’s say I designed microwave ovens. I would do the engineering design, user interface, etc. and see that it gets to market. After about four months, a new revision or version of it would come out. Why? What is special about four months? Why were some new features added and some fixed?

1. Customer feedback / complaints?
2. Catching up to a competitor?
3. My spouse left town?

The actual answer is “3,” my spouse (or partner or roommate or chef) left town and I had to use the microwave myself. Whenever I used my own product for the same reasons as, or in the manner of my customer, or rather, the device’s end-user, I found all the problems and missing features. In other words, I had to be the customer / end-user, not the designer, to fully understand that I needed a “popcorn” preset.

Unless I walked in the user’s shoes, the design was not all it could be. Or needed to be.

I have been in Truebeam for the last 24 weekdays. As you know at this point, I get up on that table, pull down my pants and manly panties, and lie on a white sheet. The machine projects three-green cross hairs. Two radiation therapists, one on each side of me, grab the sheet and coordinate pulls and tugs to move me into the precise position (i.e., each cross hair on a particular blue-dot tattoo).

Each set-up costs 3–5 million dollars. The machine, the table, the room with its 14 inch thick walls, the computer systems, etc. Oh, and the white sheet for tugging.

Give me $500 and a month and I will make it controlled with two joysticks. Better yet, for $1500 I will make it all automatic. Really. Design and prototype.  Better yet, a barter … I will give you a working prototype, you get this fucking tumor out of my ass.

My point? Truebeam designers have never been treated for rectal cancer with their device. Or they have never watched what happens when I get onto it. My experience in their machine is complete foreign to them; they only have their assumptions.

There are many sympathetic people in my big-city hospital (except for two who can use some major re-training). I respect these people and I guess I appreciate their sympathy, but if I thought about that more, maybe not so much.

Empathy? Nope. Nada. Crickets. Othing-nay.

Handing me an enema and pointing me to a dirty bathroom floor to take it on shows either a total lack of empathy or shows that one just does not care.

To get the tattoo targets I had to lie on a different machine, in a different building, with several techs around. And a young intern. I had little idea what was going to happen, I was told I would not feel anything. At one point I felt something strange on my skin. I had to ask what was happening and someone said they were “drawing” on me. Why not preface it with the truth:

I need to write on your skin a bit. It is not permanent but will take you about a week of scrubbing your skin raw to remove it. Ok?

I don’t know about you, but I honestly found that someone writing on me without my knowledge to be extremely invasive and bothersome. A simple “I need to highlight this spot with a pen” would work. Is it ok with you if your doctor needs to draw on your body for some reason and just does it? Your dentist? Gynecologist?

You don’t have to have empathy, nor sympathy for that matter. I have cancer and will let you do what you need to in the hopes that I survive. To a large degree your actions determine how emotionally difficult, how logistically difficult, my fight will be along the way. It’s the smallest thing that sometimes make the biggest difference.

What if this was you?

As per my weekday ritual, I empty my bladder at 11:00 and then start drinking to fill it up again. It usually kind of works to have a full bladder for my 1:15 appointment with Truebeam, the radiology automaton.

I arrive at 1:05 with a full bladder to find a sign that says “All appointments are running 30 minutes late.” Well that pissed me off, so to speak. My choice was to go relieve myself and start again (causing my appointment to be even later) or hang in there. So I paced a bit, distracted myself and did ok. Kay finally came out to get me.

I walk up to the computer control desk area, tell them my name and birth date, verify that the picture on the monitor is me, and go into the room with one plan: get on the table, get a gazillion rads of radiation throughout my pelvic girdle, and be on a toilet within eight minutes.

There is an older woman in the room, I don’t know who she is, and I start to get on the table.

You can’t get on like that.

What the fuck? Who is this woman and what is her problem? Does she even work here? Does she have a name? A clue?

You need to remove your pump, you can’t get on with your belt like that. You need to lower your pants.

I stood there dumbfounded, staring at her. But alas, dumbfounded for about five seconds. Unfortunately my filters kicked in.

I’ve been doing this for 22 days, I am getting on the damn table.

And I did as usual. Lowering my pants, etc. as always, once I am on the table. Then Kay came in. They positioned me and for some reason there was a problem with the position and the pre-scan imaging took a bit longer than usual. Finally I heard the lovely sound of Truebeam doing that Godzilla atomic breath thing. Two 45-second scans, I pull up my skivvies, pull up my pants, hop off the table, and on my way to the toilet I quietly say to Kay, “That other woman is a moron.”

Cancer should not be this difficult.